You

If your child has an autoinflammatory condition, you probably find yourself putting their needs first and your own second, or even third or fourth behind family and work. Even when you are pulled in a million different directions, it is important to make time for yourself and think about what support you might need. Consider the articles here that are dedicated to helping you overcome challenges you may face.

How to manage expectations when living with rare autoinflammatory conditions

Have you been living with a rare autoinflammatory (AI) condition for a long time or just been diagnosed? Either way, your condition is bound to affect your life. When living with rare AI conditions like SJIA, AOSD and periodic fever syndromes: CAPS, FMF, HIDS/MKD and TRAPS, symptoms can occur randomly which means you never know how and when they will affect your day. The unpredictable nature of these conditions means you are likely to experience situations where you feel you cannot live up to other people’s expectations or you are in need of more support and understanding from the people around you. To help you build understanding amongst your friends, partner, and colleagues, and to navigate the maze of social interactions when living with these AI conditions, we have gathered a few top tips on what you can do to help keep your relationships healthy and your own stress levels down.

Friends

One of the things all the conditions have in common is the impact it can have on one’s social life. It is inevitable that sometimes you will encounter symptoms that may hinder your activities/hobbies, leading you to cancel or postpone plans. As we all know cancelling last minute never goes down well with friends and you may sometimes find it is easier to not make any plans at all – no plans = no disappointment, right? Wrong! Your symptoms will be unpredictable and it is therefore impossible to plan your life around your condition. Instead of avoiding plans, the better option would be to educate your friends on your condition helping them to understand your circumstances and needs. It is important that your friends know that your disease can change from day to day, sometimes affecting your ability to perform certain tasks which might lead to you cancelling plans last minute. By being open and honest with your friends they are more likely to understand and take your condition into consideration before planning hangouts, events or trips, and you will most likely find that they will be happy to skip the dinner or trip to the museum and instead come and hangout with you at home when you are not feeling well. Honestly, who wouldn’t prefer popcorn and a movie at home with a close friend over going out?

Relationship

If you are suffering from a rare AI condition where periodic fevers occur, in particular AOSD, where you’ve received diagnosis in later life, the impact of the condition and your new reality is likely to have an influence on your relationship. As hard as it is for you to live with the condition and fully grasp what this means to you, it is likely to be equally as hard for your better half. When in a relationship we all want to be everything we can be to each other and this is no different when living with periodic fevers. Regardless of whether your partner has been part of your path to diagnosis or you’ve only recently met, it will inevitably be hard for them to see you suffer without knowing how they can help you. Although their reactions may lead you to feel it is best to spare them from what you are going through, could you consider a different approach? As with friends, the key to a supportive relationship is being open and honest with those closest to you about your condition, and helping them to understand what you are going through and how they can help. It is therefore important that you include them in your process and instead of focusing on how your condition impacts you alone, focus on how it impacts you both. One of the best ways to do this would be to invite your partner to your next consultation with your doctor. Hearing from a specialist about the ins and outs of the disease will help them to understand how and when they can help. Instead of them seeing you deal with your disease alone, it can help them feel included in your care.

Work

As we all know work can sometimes be very stressful and when living with a rare AI condition it can, for some conditions, such as CAPS and TRAPS in particular, trigger a flare. The potential triggers associated with work as well as the unpredictable nature of the conditions mean that working full-time can be very difficult – however, it is not impossible. To help minimise your condition’s impact on you and your work, it is important that you manage expectations amongst your colleagues and employer to enable a supportive environment. One of the key things you need to do is to educate your employee and colleagues about what the condition is and the impact it can have on your time. Once they understand they are more likely to be supportive, which puts you in a better position to offer solutions and negotiate the terms of your role. Speak to your HR department about your condition and needs and ask them for their advice. Every company is different but in some cases your HR department may suggest to your employer that they put in place flexible working arrangements for you which will allow you to work from home or alternatively that you work your contracted hours outside of normal working hours - just in case you experience a fever during work hours. Discuss who can help you if you become very sick at work, and always allow room in your timelines for sudden flares to enable you and your colleagues to meet deadlines.

Keeping the Spark Alive

Juggling work, friends, chores, and children, in particular caring for a child with an autoinflammatory condition, can be a challenge. As you and your partner try to keep it all together, including your relationship, you may notice a few cracks appearing. It is easy to de-prioritise each other, and then, before you know it, the spark in your relationship can dim. You aren’t doomed though! Here are some simple steps you can consider to keep the spark burning bright.

Give a surprise

Spontaneously surprise your partner…not every day but on occasion. Show them how much you care by cooking their favourite meal, buying them a small gift (a bar of chocolate is always a great but quick and easy purchase), or booking them a massage. You know your partner best so make it personal and remember…it doesn’t have to be a huge gesture…a little goes a long way!

Communicate romantically and lovingly

When you’re apart, even for just a few hours or a day, send a loving text message to your partner. Tell them how much you love them, are thinking about them, miss them, or simply thank them for being them – encourage and love them via text.

Schedule date nights

Remember the early days of your relationship, when you actually dated? Reinstate the date! If you can, set aside an evening or morning, whatever time works for you, when you can find a carer/support for your child, and spend time with your partner. Going out for dinner, a walk, a coffee, breakfast, anything rather than slumping on the sofa watching TV or talking about the mundane can help you remember why you fell in love in the first place and help reignite the spark.

Work as a team

It’s all too easy to start operating alone but you and your partner are a team, so work as one. Set goals you can achieve together, share responsibilities, talk through any pending decisions and make them together. Both parents should try to learn more about the autoinflammatory disease, so they can be "on the same page" more often when there are discussions about the medical, school, or other needs of the child with a periodic fever syndrome. Care for your child/children together and agree a party line so your children don’t play you off against one another. Functioning as a team can bring you closer and strengthen your relationship – it can remind you of your partner’s qualities.

Help each other It can be hard for a parent to get time for their needs, if they are managing care and appointments for everyone else in the family, and they can get discourage. If one parent is caring for the children most hours of the week, they may need some time to take care of their own needs (e.g. having an haircut, do some shopping). Making time for them to address some of their needs will boost the relationship greatly.

Chat about your hopes and dreams

In the early days of your relationship you probably talked constantly about your aspirations. To own a coffee shop, travel the world, live by the sea or in the mountains. Life with a sick child should not stop you from pursuing your dreams. Set aside time to discuss your hopes for the future, no matter how big or small and then support one another in making those dreams become a reality within the boundaries you are facing. Hoping and planning for the future can bring back excitement into your relationship.

Be enthusiastic when you see each other

Think about how you greet your partner when he/she walks through the door. Do you launch into conversation about what needs to be done, what happened with your child today, the next appointment your child has, or do you greet them with a kiss and a smile? The everyday life needs to be discussed, but the way you greet one another can set the tone for the day or the evening. So, let the list of ‘to dos’ wait and just say hello and enjoy each other’s company for a few minutes.

Walking the tightrope between work and home life

Juggling the demands of work and home life is hard enough, but when you are caring for a child with an autoinflammatory disease, it can be even harder. How do you cope with work pressures and family pressures and find the right balance?

Have you heard of ‘role theory’? It’s a method for developing balanced coping mechanisms through role negotiation. It is rooted in the idea of partnering with others to understand and manage the multiple demands associated with working and caring for a child with ongoing illness. Often health educators use this tool to help parents understand the demands of their child’s illness, but you can use this method to improve care and management of different tasks in your life and family. Ultimately, it provides a framework to help you create sensible strategies to:

Meet the medical and emotional needs of your child

Maintain your own physical and mental health

Manage the demands of other roles, such as your role at work

This is a relatively simple six-step process, which you can implement to achieve a balance across the various roles that you might have to fulfil in life.

1. Identify caregiver role demands

Identify the severity, predictability and communicability of your child’s illness and what caregiving is required both now and in the future

2. Define role set

Identify all potential caregivers (family members, friends, babysitters, school teachers, etc.) and talk to your child about what things he/she can do for himself/herself

3. Recognise resources and barriers afforded by existing roles

Identify ‘instrumental’ support sources that can make your day-to-day life easier, such as:

Family and friends or professional caregivers, who may be instrumental in providing support

Flexible working arrangements to allow you to go to work late, work from home, take time off for appointments, etc.

Work benefits to allow you compassionate leave to care for your child and/or health insurance that covers your child

Identify ‘social’ support sources, such as:

Health professionals, counselors, support groups, parents of other children who are ill, friends and family who can offer emotional support and compassion

4. Negotiate workable roles

Discuss and agree a flexible working arrangement with your employer, if needed

Think about and agree who can do what, when, where, why and how to support you

Be clear on the exact role so there is no confusion

Try not to give anyone too much to do or a role they aren’t suited to

5. Work toward role integration

Work out who will step in if someone can’t do what they have previously agreed to do at a particular time, and how a back-up plan will be put into place

Encourage everyone involved to spontaneously help each other out, and communicate changes to the routine

6. Renegotiate roles as necessary

Re-work the plan you have in place as life evolves, e.g. a promotion increases the demands of work, your child’s health status alters, your child hits their teenage years and has different needs, etc.

Taking a step back to work out an effective way to cope with everything on your plate can help to improve things in the short-term but also establish plans for future needs. Taking the time to follow this six-step process to identify the demands placed on your time and the ways in which you can negotiate roles, whether it’s your own work role or the role of a supportive friend or caregiver, can help you to find ways to maintain a manageable work-life balance.

The blame game

When a child is diagnosed with a rare disease, one of the first things parents wonder is: Did I cause this? Is this somehow my fault?

Parents of children who have been diagnosed with rare conditions can feel guilty for a lot of different reasons. If the autoinflammatory disease is genetic, they can feel guilty for “passing on bad genes” to their child. Or they may blame their partner instead.

When it comes to detrimental things that you can do to mess up your relationships, blaming the other person for something – justified (in your mind) or not –is at, or near, the top of the list. Here are four things to consider if you find yourself playing the blame game:

Pain The first step is just to notice if it’s an issue in your relationship. Are you fighting, getting angry with each other for no apparent reason? Are you hiding a bigger issue that you are blaming each other for?

Awareness Get super-aware of when you’re blaming or faulting or accusing, even if you’re doing it in your head. And why. If you can catch yourself sooner, you can let it go and pre-empt starting a fight.

Take Responsibility This is the hardest part, because it’s easier to find fault in others than in ourselves. We want to be right. So just do an experiment, and see if you can take complete responsibility for your life, including your relationship. See what happens. Remember, this advice applies to anyone who’s in a healthy relationship. This doesn’t mean you need to take responsibility for your child being sick, it means that you need to take responsibility for how you are handling it.

Communicate Tell your partner what’s been going on, how you feel about it, and the effort you’re going to make. (And if something’s really bothering you, communicate your feelings without blaming.) Also consider speaking with a counselor as a couple. Having an external person to speak to may also help to solidify your relationship and get you on the same team. Once you’re both making an effort, you’re well on your way.